Wednesday, July 29, 2015

Back to the Emergency Room we go...

Week 2 of Reagan's Constraint Therapy at Kennedy Krieger was off to a
good start Monday morning
July 27th with a 6:30am departure to Baltimore.  We dropped her off and headed to the Baltimore Zoo.  Overall we had a great time at the zoo and I was very impressed by the exhibits there.  The penguins were amazing and we were able to get very close to a lot of the large animals.

About 30 minutes after we got there, though, Cole started complaining of head aches.  He ended up falling asleep on my shoulder and woke up feeling better.  We walk around a little longer and then started getting another head ache so we headed for the car.  Unfortunately, we've been tracking these symptoms since January 9th when this all started.  He had 4 episodes in February, one in June and now 4 in July.  All symptoms include complaints of a head ache, crying, asking for water and trying to pop his ears (trying to release the pressure).  Of those 10 episodes four also included vomiting.

I was on the phone with the neurosurgeon after the second episode on Monday and when the third started I decided to head to the ER.  Unfortunately just as we pulled up he threw up all over my back seat.  I ran in and was immediately brought to a room.  After retelling his entire NICU journey FOUR TIMES and the history of these episodes from January FOUR TIMES they ordered an x-ray and MRI to see if there was a shunt malfunction.  Cole did GREAT for both tests.  He is highly sensitive to noise so I was very worried they were going to have to anesthetize him for the MRI.  But they let me lay over his legs and go into the machine with him.  He also had a head set and ear plugs which helped a lot.

Long story short, the shunt series (x-ray) confirmed there were no cracks or occlusions in the catheter leading into the shunt valve or from the valve into the brain.  The MRI showed that his ventricles were not enlarged.  And although they don't have anything to compare this scan too (since those records are at Children's National) the vents were super small.  This leads us to believe that the issue is not the shunt hardware.  With that said, the x-ray did show that Cole has a severely compacted colon and backed up intestines.  Apparently so constipated that the theory is that the bowel is pushing against the abdomen and preventing the shunt from draining correctly.  So when the shunt can't drain properly it  puts pressure on the brain causing a head ache.  If the head ache is severe, he then vomits which releases the pressure and makes the head ache go away.

Cole was definitely a trooper.  It is so hard to see him go from his normal, happy self to being unable to lift his head from my shoulder and moaning in pain from the head ache.  But luckily all these episodes generally resolve in about an hour. The longest one was Monday which started at about 4pm when he woke up from a nap with a head ache until about 9pm that night.  Given he is feeling well between episodes (and we haven't had another one since Monday night) he had fun visiting with Chloe, the therapy dog.  He also visited with two clowns, Dr. Boots and his assistant.  They were absolutely hysterical and Cole had fun popping their bubbles and joking with them.  The hospital also had a great Child Life specialist who brought him toys in the ER and once we were admitted they had a great playroom on the floor where he could find new toys to entertain him.

Ultimately they decided to give Cole and enima and send us home Tuesday afternoon with a regimen of strict Mirilax for the next 6 months.  We will follow-up with his neurosurgeon and determine if further testing is necessary.  After speaking with the pediatrician today, however, she doesn't think the Mirilax is aggressive enough and has recommended magnesium citrate.  I asked the Pediatrician in the hospital about that but he said it wasn't necessary since our situation wasn't really an emergency.  After reviewing the X-rays, however, our pediatrician said it really isn't a good idea to wait a week for the Mirilax to kick in.  She is of ht opinion that vomiting because his shunt isn't draining definitely constitutes a more aggressive plan.  So tomorrow we will start a cleansing process.  Unfortunately we have an appointment at the National Federation of the Blind at 9:30am and Cole has therapy at 2:30pm so it should be interesting to see how we can make all that work.  I truly have no idea what to expect.

Only time will tell how this will resolve.  Hopefully the steps we are taking will help and we won't continue to see the symptoms.  I can't thank everyone enough for all their prayers and offers to help.  We definitely have the best support system and it truly makes all the difference in the world.  Let's hope the rest of our week is less eventful!

Saturday, July 25, 2015

Kennedy Krieger ~ Week 1 is DONE!

Day 4 ~ Thursday, July 23rd
After we dropped Reagan off at therapy we decided to walk around the John's Hopkins Campus.  It is definitely much larger than I realized and some of the architecture is absolutely beautiful!  I've included a picture from the hospital built in 1889.

Today was Reagan's first full day in therapy (aka camp) and it definitely exhausted her!  I heard about a lot of fun things they did today when I picked her up.  This included riding bikes outside, playing X-Box Volleyball, playing Candyland and Connect Four.  They also decorated visors for their field trip to mini-golf tomorrow.  It's important to remember, for everything she is doing, it's all with her left hand since her right is in a cast.  Each movement for her takes extra time because she has to focus so intently on it.  Overall it was a good day, although she did get hit in the forehead by her friend Jaryn.  And although it was an accident, that cast material left a nice crosshatch red spot on her forehead!  The day before she got angry with Cole and hit him in the forehead.  After she explained what happened with Jaryn she said, "now I know how Cole feels."  Yup...

After therapy I promised Reagan some pool time.  Unfortunately given we're in a 37 story hotel the sun is mostly behind the building in the late afternoon.  Given the pool was just refilled Tuesday, the water is pretty cold when there wasn't much sunshine.  We took a quick dip and then headed to the room for movie night and Chinese delivery.  Kids were in bed just after 8pm and we're looking forward to a LONG night of sleep!

The day ended very well and Reagan was in good spirits.  And as you can tell from the picture, Reagan was able to successfully push the elevator button!  It's still a lot of work, but she has been able to get enough pressure in her thumb that it doesn't collapse (hyperextend).  She is very excited to show off her new trick!

Day 5 ~ Friday, July 24th
Our last day of week one!  After I dropped Reagan off at therapy I headed back to the hotel and we got the room packed up.  We then decided to walk around downtown while we waited for Reagan to finish for the day. We found a diamond in the rough! I had no idea the first Catholic Basilica in the United States was in walking distance from our hotel! Wow, what a beautiful church!

After loading our bags in the car we headed to the inner harbor to walk around and get some fresh air.  Cole was pretty excited to meet "the real Spiderman"!  Apparently this weekend is the Otakon Convention which is the largest East Coast comic book conference.   It was AMAZING how many people convened in Baltimore dressed in costume.  After walking around for a few hours we headed to the hospital to pick Reagan up and get on the road home.  She had a good day but was very tired.  They played games in the morning and then headed out on a field trip to play mini golf after lunch.  Unfortunately when we got in the car she was exhausted and rather frustrated.  I'm finding that she holds it together at therapy and then just needs to release her frustration when we get in the car.  She eventually works through it, but it's hard when I feel like I can fix it.  

Overall it was a great week, but I continue to find it intriguing how each round of constraint is so very different (age 3, 4, 5 and now 6).  She is still motivated by doing things with her left hand and is very proud of what she can do.  As shown in this picture, she can now support her weight on her left hand even while leaning back.  But this time around she is able to see her challenges so much more than in the past, mostly because she is much more independent now than last August.  With the cast, she can't get dressed, can't brush her teeth and can't eat by herself.  She made comments during kindergarten last year about "why don't other kids have trouble with their left hand".  So she has known lefty has trouble and we've worked through those feelings, but yesterday she kept saying, "lefty doesn't do anything right" and "lefty doesn't listen to anything I ask him to do" and "before I had the cast I didn't need help."  I know that this experience is making her realize how hard she has to work, but I have to believe that long term it is giving her the opportunity to build up strength in that hand.  As always, struggle knowing what opportunities to provide her and how to help her work through them.  I'm praying for guidance to help her work through this and come out the other side realizing how blessed she is.

One pretty big update that I haven't shared from this week is regarding the tightness in Reagan's leg.  As you may remember, the Physiatrist and PT did not agree on a brace and we ultimately decided we should take some time off and see how she does.  The PT at Kennedy Krieger…without hesitation…asked why we weren't using one.  When I told her, she said she completely disagrees and that Reagan is very tight and should go back in a brace.  She is recommending a hinged brace which is, of course, big and bulky.  She said we can also consider the Bioness electrical stimulation cuff, but that she needs to be in something.  Truthfully my heart just sank.  I was feeling so positive about having that behind us.  We will need to take this advice to the Physiatrist and see what she thinks.  But for now we are going to enjoy our weekend at home and some good quality time with Daddy.

Thursday, July 23, 2015

Constraint Therapy at Kennedy Krieger ~ Cast is on!

Sorry for the long post - I promise they will be less detailed next week!

Day 1 ~ Monday, July 20th
Well we started our adventure bright and early Monday morning with a 7am departure.  We arrived at the hospital with plenty of time before Cole's 10am Occupational Therapy appointment with Emily.  We had a great meeting with her and he spent most of his session this week getting to know her and having her learn where they should focus for the next 5 weeks.  Given the short timeframe, she recommended we choose a very focused goal.  My recommendation was to focus on writing since he struggles being able to put enough pressure and actuation on a writing utensil and I know that will be very important next year in school.  He responded to her very well and we look forward to seeing her every Monday at 10am.  We were rather surprised that parking was $12 for our 1 hour and 20 min stay but decided we will do some research on less expensive alternatives.

After therapy we went to the hotel to see if our room was available.  Unfortunately it was not ready, and they had not connected with Ronald McDonald House yet to get authorization for the $65 RMH rate.  This has been a week long saga of communication hand-offs trying to get this coordinated.  So off to lunch we went at the Inner Harbor.  We parked at the mall and walked over to Panera hoping to spend the afternoon at the Inner Harbor but it was oppressively hot.  So we decided to go back to the
hotel and wait for our room.  Another $14 in parking and we headed to the hotel.  Luckily our room was ready and we check-in.  Although I knew it was $32 to valet park, I thought the $16 self park option was on property…nope…it's down the street AND you pay another $16 every time you need to take your car out.  So it'll be $32 just to take Reagan to therapy and back.  I am trying to coordinate a monthly rate, but currently the offer is $450 for the month for parking.  Needless to say I'm asking them to reconsider given we are here for a hospital stay.

After lunch we let the kids have some time at the pool before heading to Little Italy for dinner.  Not only were we excited about pasta, I was excited about not spending any more money on parking!  We had a great dinner at Amicci's and headed back to the hotel for an early bedtime.  The kids were in bed and lights out by 7:50pm to get us ready for Day 1 of Constraint Camp at Kennedy Krieger!

Day 2 ~ Tuesday, July 21st
After getting the kids in bed super early I thought Tuesday morning would be a BREEZE!  Unfortunately Cole decided to wake up at 2am and didn't go back to sleep until just before 5am.  Given there were three of us in the bed, I didn't get much sleep.  When the alarm went off at 7am I thought it was a bad dream.  But we managed to get out the door on time and had a quick breakfast at the hotel.  We arrived at Kennedy Krieger with plenty of time, parked in the FREE PARKING garage and were SO excited about that!  Although Reagan wasn't nervous at all, I was feeling a little apprehensive.  I know all too well that the attitude and personality of all the staff we meet will make or break Reagan's perspective of this entire experience.  My normally outgoing Reagan was definitely a little shy but she quickly warmed up when she met her new OT.  She ran off immediately to have her "before" video taken so show her performance and capabilities across multiple different activities.  While she was meeting with the OT I met with the intake manager to fill out consent forms, then the Director of the program, the Nurse Manager, the OT, and then the PT (while Reagan was with the OT getting her cast made) to answer questions about her history, capabilities, concerns and goals for the next 5 weeks.

I can't say enough amazing things about the team there.  At one point Reagan and I were waiting for them to take her vitals and saw a young woman in a wheel chair heading down the hall with a young man with very thick glasses and orthotics on both legs much like Reagan used to wear.  He was pushing a cart of snacks.  I quickly asked Reagan if she wanted something when I realized what they were doing.  They were teaching these two math and money!  I could have cried.  It was so fun to see how proud the two young people were telling us all about the things they had to sell and how much each thing cost.  Reagan chose a very small bag of carrots for $1 and after giving them a $5 bill they both focused very hard on their task and although they didn't get it right, their therapists were very supportive and helped them figure out my change.  Wow, what a great program….I'm impressed already.

We were done at the hospital by noon Tuesday and headed out to meet Megan and Cole for one of our very few free afternoons.  We decided to meet them at the Inner Harbor - they went to Port Discovery while we were at the hospital and we were all ready for lunch.  After a quick stop at Pot Belly to get out of the heat we walk around the old ships and then headed to the B&O Train Museum.  We didn't really know what to expect, but it was VERY cool.  Reagan had no interest in going but Cole was super excited.  When we left I asked Reagan if she had fun and she said, "well, I liked it better than I thought I would."  I consider that a win!  We were able to walk on several different types of trains (coal train, Post Office train, passenger train, pioneer train) in addition to ride a small train and see a small train village.  Given it was super hot we decided to head back to the hotel pool and then have dinner.  Unfortunately the pool was closed for maintenance so the kids had a little down time and then we decided to eat in the hotel and get to bed early since we didn't sleep well the night before.

Day 3 ~ Wednesday, July 22nd
Day 3 started at 6am when Reagan fell off the couch and decided it was morning and we should all get up.  It was her first day wearing the cast but it was a half day of therapy since it was Wednesday.  Although she met one of her camp friends, Jaren, on Tuesday, it ends up the other little girl withdrew from camp last minute.  And because I am not invited to stay for therapy, I am not able to get many pictures of the types of activities they do.  Luckily Reagan is getting old enough that she can explain many of her activities and tell me about her day.

Today Reagan had her cast put on and it will stay on for a full week.  As you can see from her picture, she chose the purple and blue leopard duck tape and convinced the OT to draw pink and green hearts all over her cast.  They did some outdoor activities on the hospital playground, did some indoor therapy and also met one of the therapy dogs.  Although she was in a good mood when we left, she went down hill quickly once we got in the car.  For those who know Reagan, she gets hot very easily and if given the choice, would wear tank tops all winter.  She also hates to be constrained by anything…like sweater, a life vest…or a cast.  We planned to go to a local pool after therapy and headed there from the hospital.  She was in a full melt down in the car, screaming "get this cast off me right now" and beating it against the seat.  I pulled over twice to try to calm her down, but it was a hot day and she was inconsolable for a good 30 minutes.  She was also frustrated that she couldn't straighten her arm.  I tried to talk to her as I was driving explaining that crying so hysterically would make it worse and that she needed to calm down.  To which she said, "you're lying, I calmed down and it isn't better." A crushing moment as a mom when you can't fix it...

Unfortunately we arrived at the first pool at Roosevelt Park and there was no pool.  We arrived at the back up pool in Patterson Park and it was extremely CROWDED.  Easily 300 people.  And it was slightly bizarre…for example, there were no chairs and you couldn't wear clothes to enter the pool area. There was a guard (bouncer?) stopping anyone who even had on a pool cover up.  But it was $8 for all four of us to get in - best deal we've had all week!  We stayed for a little over an hour and Reagan was beat so we headed back to the hotel, had a quiet evening with left over pasta and called it a night.

I will say, it's amazing to watch Reagan's transformation when she's in "constraint mode".  She really puts her heart into using her left hand….even though it's super hard.  She's unable to push an elevator button, but she did get pretty good at fast forwarding the Netflix movie on the iPad with her left hand last night.  She was even able to eat her macaroni and cheese almost by herself!  She also electively ate strawberries and blueberries with lefty.  This is a HUGE improvement from our last constraint program.  I had forgotten how many things are really hard though…like scratching an itch.  Her left hand is not able to scratch anything regardless of location so I'm now in charge of that for the next four weeks.  And the big news for the day….drum roll please….after 3 days of numerous phone calls I was able to secure a monthly parking pass at the hotel for the low, low rate of $250 for the month.  That doesn't sound good, but it's better than $32 per night for 5 weeks!  Yikes…well glad that's figured out.

Sunday, July 19, 2015

Summer is done and we're headed to Kennedy Krieger!

We've had a great summer!  The week after school ended in June we had a nice slow week with a lot of pool time.  The following week Reagan and Cole went to swim camp together.  Then we took a family vacation to TN followed by another week of swim camp for Cole while Reagan went to a riding camp.

The swim camp the kids went to was at the same school where they've been taking lessons - Tom Dolan School.  They had a great time and will miss going to lessons while we're at Kennedy Krieger.  The kids also had their last day of Tae Kwon Do today until September.  Although we will miss the Masters there, I'm sure the kids will be practicing while we're gone! They just got their new belts and are anxious to keep learning new moves!

Reagan loved riding camp at Red Gate the last two summers so we planned another one this year.  Unlike the last two years, however, she stayed ALL DAY this year!  It was tough for mom to let the cord get quite so long, but Reagan had a blast and didn't look back once.  She rode the same pony she usually rides in lessons named Tuppence.  It's such an amazing group of girls there - both the kids who attend and the CITs.  The Counselors In Training, or CITs, are teenagers who meet certain qualifications to help out with camp.  They make it a lot of fun.  Reagan was lucky enough to have her cousins there too!  Jacqueline and Robert kept an eye on her and it was fun for them to spend the week together.

The camp is broken into two groups - one group rides first while the other works on a craft.  Then they swap.  And each of the two groups is divided in half so the kids in the group have very similar riding ability.  This week they made concrete stepping stones with horse shoes and glittery gems, tie die t-shirts, foam door hangers, and they decorated a picture frame.  After a morning of riding and crafts they break for lunch in the pavilion and time to play on the moon bounce.  Then after lunch they have swim time in the pool at the house.

The last activity for the week is a costume parade where the kids dress up their ponies.  Reagan decided to dress Tuppence up as a fairy with a flower crown full of ribbons, pink and green wings, sparkling pink fabric around her belly, a pink bracelet around her leg and pink bow on her tail.  And she and her partner decided to wear the extra tutu's I had packed in case they wanted to use them for Tuppence. Reagan and her partner had help from their CIT for the week, Hannah and their costume won a first place ribbon for "Most Glittery".  It's fun to see Reagan around such a great group of girls creating such a bond with friends.  And she truly does have a love for horses.

Now the fun is done and it's off to Baltimore for 5 weeks of hard work. That's of course not the way we're talking about it though!  After sensing some anxiety over having the cast on full time, I've repositioned things (at UVA she could take it off to sleep). We are going to "camp" next week in Baltimore. It's all about positioning and expectations right?!

Unfortunately we couldn't get into the Ronald McDonald House so we'll be staying at a hotel (with a hospital rate).  The up side is that we have free breakfast and a pool (albeit very small) and Reagan's cast will be water proof.  The hotel also has a city bus route across from the hotel so we are hoping to not have to pay the expense parking lot fees to go to dinner every night.  Apparently Reagan will have "themes" every week at camp so hopefully it will feel like camp not therapy.  Honestly I'm a little anxious about 6 hours per day and 5 days per week, but we're going to jump in full speed with a positive attitude.  More pictures to come next week!